Stupid Achondroplasia :)

On a recent shopping trip, Leah decided it would be a fun to measure her height in the kiddies clothing department.  We have been stuck on 107cm for a quite some time and she is well aware of this “no growth progress point” but really?…… she has dwarfism so we are not expecting much growth anyway.

So as we step up to the measuring chart I say “WAY TO GO LEAH you are 107cm” and Leah then responds with “This stupid achondroplasia …..Mommy how many times do I have to BEG you to get me heels? I was thinking that it was going to be a sad moment that would need some pep talk, but after a long silence she said “Mom make sure my heels are blinged up I want to wear them with my tight black pants” No pep talk needed just a little girl dreaming of her first pair of high heels 😉

raising Leah

Officially a Dwarf

LEAH

On a resent visit to the mall, I noticed that almost every person I walked past took a back take when they saw Leah, some just using their eyes as they walked past us, others even went as far as stopping to stare…. I don’t want to sound like im exaggerating about this matter; most of the time I just keep quiet because I feel that all people ever hear me speak about is Leah and Achondroplasia!

I feel I have to vent some feeling on this post. The reason why I know that the stares were more noticeable is because my six-year-old daughter Nicole turned to me and asked why everybody was looking at Leah? This is when I realized that there are no more … “I cant notice so much” or the “im not quite sure” stares, this was Official Leah has taken on the full appearance of a “little person” and the reason why its not noticeable to us as her family is because we are with her everyday we don’t see her as being different.

I have brought this topic up during a conversation with one or two of my acquaintances and I was told that being the parents of special children we (the parent) tend to overreact to the “staring thing”, and sometimes people just stare, they don’t actually mean anything by their reaction. At the time of that particular conversation I thought that maybe this person was right and just maybe I am overacting…. but today after some long hard thinking I beg to differ. I distinctly remember one of my first “childhood life” lessons taught to me by my parents, and that was not to “STARE” because it can be considered rude, and if you do happen to see something that you would like to know more about, ask your questions tactfully in order to get an answer.

Society tends to dictate what is “normal” and “acceptable” and I know that there are some individuals out there who believe that people with physical and mental disabilities don’t have much purpose or value in our society. I was once asked the question of weather I would send Leah to main stream or special needs school, when I gave main stream schooling as my preference for her, I was horrified at the reaction I received “ Why would you want to main stream Leah when clearly she is not going to fit in”….  “Why”…   There might be social acceptability issues because she looks different??

SHE IS SHORT!!!!!! Leah is not mentally or physically challenged, who gives them the right to decides who fits in, and what is socially acceptable?

I have come to the realization that I will never be able to change the way strangers react when they see Leah for the first time. I sometimes wonder if I have worked through all my emotions regarding Leah’s achondroplasia, I know that there are some issues that will stay, the biggest being the sense of protectiveness, I will always be protective of her, especially while she is to young to defend herself. I have promised myself that I will raise her to believe that she will be a fully capable young woman who can do anything she sets her mind to. It is disappointing that some people will never change and they have made up their minds as to what is acceptable and what is not, sad thing is there are so much more to life, and they will never experience the true joy of being free spirited, their judgmental ways will consume them as they try to fit into a world that they believe is perfect.

So I say thank goodness I am not one of them… those are the people I fight against, I have made it my mission to raise awareness about Dwarfism, and I will fight to have my child live and enjoy life just as any other “normal” child would, with the freedom of choice to do what she feels will fulfill her dreams.

My hope is that instead of a blank stare, come over and ask her name so that next time you see us you will say, “Hey look its Leah”, instead of  “Hey it’s the little Dwarf girl oh shame”. I really hope that this day comes soon because Leah is such a blessing to us, and we would love to have her touch your heart and be a friend and blessing to you as well.

Little People in Cape Town……

The Excitement is sprouting….. we don’t have an official name but its safe to say that our Little People support group is official, we had our second get together on Saturday and although we are only  7 families we are positive that we are going to grow and grow.

Red Cross Children’s Hospital has given us their support by allowing us to use their facilities for our meetings, they have offered support in the form of Genetic counseling , occupational therapist the use of the play room and boardroom …. (and so much more )

Heather (Danielle’s mom) got in contact with Dr Fieggen of UCT division of human genetics (Dr Fieggen runs the genetic clinic at Red Cross and she is familiar with most of our little ones) and Dr Fieggen expressed how excited she was at our efforts and she has offered to make contact with any new or old parents on her database to inform them of the support group.

We had many areas to discuss at our meeting and we are about to get things going…. so there is lots of work ahead but its all good!!!!!!!!!!!! And im so excited to be part of this vision….

Here are some pictures or our little ones in Cape Town South Africa

(and what a active bunch they are!!!!)

Joel, Joshua and Martinque

Leah and Danielle

Leah and Danielle

Martinque

Martinque

Hamaz, Martinque abd King Joel

Hamaz, Martinque and King Joel

Ashley giving Joshua a helping hand

Ashley giving Joshua a helping hand

Having fun!!!!

Having fun!!!!

The terrible two’s

I have been through the terrible twos before; in fact this will be my third encounter with this dreaded phase of growing up!!! Simone was a very easy toddler she pretty much went about doing her thing and never really got herself into any “dangerous” situations, the same applies to Nicole who was the easiest of the three…. Nicole slept 7 hour stretches from the day she was born…. So that should give you some idea of what I mean when I say she was every parents dream baby.

With regards to Leah things are a bit different, Leah finds pleasure in all that is extreme. If I were to baby proof my house we would probably end up with empty padded rooms!!! We are constantly on “high alert”…if she is not screaming her lungs out about how everything is “MINE TOYS’ she would probably be climbing the furniture with the greatest of ease, making steps using teddy bears to create the height needed, sprinkling her apple juice all around the house, diving off the self made steps, spinning around and becoming so drunk that she walks into the furniture (which is so much fun for her and the rest for the girls and you cant help but giggle with them) and the best has to be stripping down to absolutely nothing and opening the curtains to wave at the people passing by in the nude!!!

There are many more “terrible two” stunts but I thought I would just highlight a few for now…. And I find myself terribly exhausted by all this action …so I ask myself am I getting to old for this??? And my mom says there is no time to get old because this phase should end in about 32 years time 🙂

Hello Winter My Old Friend

It seem like winter has arrived in the Souther Hemisphere…… so while all my Northern Hemisphere buddies prepare for Summer vacation and beach trips, we are unpacking the winter warmers (hoping that they still fit and have not shrunk during their summer hibernation)…. I myself am a summer baby and winter does not really go down so great with me……. sometimes I think its great how bears get to sleep through the winter and I always said if I believed in reincarnation I would love to come back as a bear.

We took some pictures on one of our last sunny days, and the day after these pictures were taken, the heavens opened, we had winds blowing at 60knots and the blue sky has been Grey ever since. At least there is one positive thing about winter that I do like, I get to cuddle with Leah (and hubby) under the fluffy warm blankets and I would not trade that for anthing in the world….. not even a Sunny Summer Day.

sunshine

And the next day………………………..

Girls will be Girls…

If you are a mother or a little girl aged between 3-10 years old, or if you have a little girl in your family, im sure you will be familiar with the Bratz dolls, they have rather large heads with long arms and legs and a short body ………so gone are the days of the perfectly proportioned Barbie doll !!!

The Bratz doll is also available in the baby version (Baby Bratz are a shorter doll with a large head and very long hair) and Simone and Nicole are the proud owners of a baby bratz doll, so Tuesday the girls ( Simone , Nicole and Leah) are playing in their room little did I know that they were creating a real life Baby Bratz doll….. so I thought I would post some pictures of their handy BRATZ makeover …